49 comments:

I thought I'm not sure,but did they not reverse that decision? Well done for highlighting the problems that people with Disabilities face,there will be many more I'm afraid.Politicians do not live in the real world. What with expenses etc, most are career Politicians,as you can see from their extra curricula activities.I am sorry I do this anonymously, other organisations do look at these sites. Including Goverment bodies, Politicions etc.

Anonymous, number two, maybe you need to do your research a bit more. This is Kaliya Franklin. She suffers from a rather severe case Ehlers Danlos Syndrome. Over the past year, her larynx has actually collapsed and nearly killed her. If she looks "fine" in that video, this is how she is now after doing the campaigning of the past year:

You probably also don't notice she is sitting in a beanbag chair in the above video because sitting in anything else will dislocate most of her joints. Her ribs dislocate if she coughs. I believe at the time of that video, her wrist had dislocated so severely she had to put it in a cast. She "looks fine" to you, she talks fine because her mind isn't disabled. She even tries to volunteer to keep busy, but working for a "living"? What employer would take someone on who vomits explosively, dislocates if she moves suddenly, and has been unable to speak till October?

Get some perspective - we do want to work, some of us even can, but the support to do so is minimal, employers don't want us anyway. Indeed those who do work will have to stop doing so once they lose their DLA as they will not be able to mobilise to do so.

Anonymous - you really seem to be believing the media about what 'a disabled person looks like' if you think just by judging someone's appearance you can see whether they are disabled. I look perfectly well, even my friends think I look amazing, yet they only usually see me on my good days, when I'm not having epileptic type seizures. I have seizures every other day, and it has been impossible for the doctors to take control of this. On the days I don't have seizures I have immense fatigue caused by the trauma that my body has just been through. I can rarely complete a full day of anything. Yet by your standards I am classed 'fit for work'. Kaliya and Sue you are both an inspiration, Keep up the amazing work! Linda k

Oh I have perspective. I am disabled myself you see, but haven't really got the time to shout at the PM because I work for a living. Part time mind you because I need physio most days. I get really bored by people who assume that I should support them in comfort while getting up every morning and working myself. Support? Well my family are pretty useful and I have had some therapy which I paid for myself, mostly to learn to think less about being a victim, Quite whinging, get out there and do something for yourself. Less complaining about your lot, more about your opportunities.

We're campaigning (among other things) for the retention of Disability Living Allowance which is often awarded as an in work benefit, specifically so that people who need support to stay in work CAN stay in work. Nobody is demanding a lifetime of leisure: just the means to live independently, support ourselves and lead a normal life.

I'm glad you've got a family who can provide that for you. Plenty of people don't have that option.

I am disabled and work almost full time but I have only been able to do that because of a supportive employer and DLA to enable me to run a car. Without either one of these, my ability to retain employment would be severely compromised. Yet I am one of the lucky ones. Many other disabled people simply could not work without DLA, cannot get a job because of the barriers of everyday life (and employers) or simply need to DLA to meet the high costs of disability. You are fortunate indeed to have family to support you; not everyone has. And remember often the cost to family members and carers can be high too - loss of employment, poverty and poor health. P.S. I still make time to shout at the PM!

Ah, hello, Wombat, now I recognise you. yes family is helpful - but I don't have any. It's me and my son. And I also work, only part time, although my own GP and specialist has told me I should stop. Indeed, Kaliya and Sue were both working until they were forced to stop.

You're also completely right - stop whinging and get out there and do something...that's why we're doing the Spartacus report, and we're making ourselves known. Personally I feel speaking out for those who can't is the most important work I've ever done.

So, carrying on from there, and not giving you any time. Be "all right Jack" if you will, but don't waste the hard-working-time you have responding to us poor useless folk. Mustn't waste time, after all!

One of the most upsetting things that happened to me recently was when I went to my surgery. I'd not been in the area long so this was only my second visit to see a GP. I described in detail how I was feeling and the concerns I had. His response was "So what have you come to see me for?"

I left.

I followed it up with a visit to the senior practitioner. I again described my concerns and how I had been treated by his colleague. His response was "I don't want to sound patronising but you don't look depressed."

I left.

I was too ill to complain. I can't change surgeries because there is no option where I live.

Good for the GP who asked what you wanted. Far too many GPs just reach for the prescription pad and the sick note. Some of the writers on here are so accustomed to thinking themselves as deserving of being kept by the rest of us, that their response to a perfectly simple question is outrage. There are far too many 'disabled' on the books and the system is urgently in need of reform.

I'd be more sympathetic if Sue and the other campaigners had anything more useful to say than ' keep shoveling money at the disabled and their advocates' and shame on anyone who questions the handouts. Oh and not wombat btw.

Oh and the lady with no family just a son. Where is your family? Where are your friends? Where is the child's father and his family? Why should I be going our to work so you don't have to. Sorry, but you smack of someone who hasn't accepted responsibility for themselves yet. If you like I will send you the name of a good but not very sympathetic support group.

Trust me, you aren't working to pay for these good but unfortunate folk. You're working to pay back the interest on the National Debt. The National Debt comes about because the government, instead of creating money itself which it can do free of interest, the government licenses money creation to the banks from whom it then borrows at interest. We have to work to pay back the interest, interest that need never have been due in the first place. This gives the banks control of the money supply and government a stick to beat us with, an arrangement which has suited both parties for centuries. Partly because this is the information age (word of what's really going on is getting out), and partly because the banks got too greedy, this cosy arrangement looks like coming to an end soon. It's in the context of what I hope is a doomed effort to preserve it that this manic persecution of the disabled and the very poor is taking place. It's a distraction and it's no doubt an important element that their circumstances make it difficult to fight back in any ways that mere governments can imagine. Where governments have gone wrong here is that they've wrongly taken on a group of people who display more individual bravery in their daily lives than any number of recent governments could muster collectively between them. They picked on the wrong targets, and it's coming back to bite them in the arse :-)

Not a good idea to assume anyone who disagrees with Sue is a bad person. She is writing a public blog after all and should be up for a little challenge to the more emotive posts. People with no one to care for them, abandoned single parents and so on. Bleeding hearts may respond to this kind of thing, but it is wearing thin for the rest of us.

Actually I do work for myself. I work to feel good, to have fun with my colleagues, to learn new things about myself and my capabilities, to buy things for myself and my children, to own a house and have a stake in the future, to feel grateful, one of the best cures for self pity there is. Work raises my spirits, gives me dignity and I encourage all those who can't even talk to their neighbours to give it a go. Begin with volunteering. You will and can move on. Envy of others apparently more fortunate is deeply corrosive. Not for nothing is it termed a deadly sin.

I wonder how many of us you think haven't done all of those things? Why would anyone think that?

Does anyone really believe that people want too live like this? That if there was any way of earning a few pounds to make life easier we wouldn't do it? That we want to give up on our dreams, hopes and ambitions?

Why would anyone even assume we have? Many of the people commenting on this very thread work - Oya's daughter for one, so she isn't one of the victims you claim?

Is it so hard to believe that many of us here are fighting this because we think it is just psycopathic? I am far from the "most vulnerable" - I don't fight for DLA for me (I haven't claimed it since 2007 when I last cancelled it myself as my condition was having a slightly better period) I fight for those who can't survive without it.

Is it so hard to understand that some people need support to live? not to have luxuries or comfort but just to live? That without that support they will have no way of feeding themselves or getting dressed or going to the toilet?

I wonder which part of that some cannot face and why?

Do you know what keeps me going on my very lowest days? The thought of the people so disabled or with such learning difficulties that they don't even know what is being done in their name. I simply will not stand by while the voiceless and invisible are hurt, just because some in society imagined they were an easy target, that no-one would step up.

There you go again Sue, with the emotive words and the mantle of crusader. The day you admit that some ' disabled' people are quite capable of getting out there, is the day people like me will start to listen to you. I work in Adult Social Care for a London Borough and believe me I meet people all the time who should be getting on with their lives productively, and not sitting in hopeless queues waiting for the next handout. They have thought themselves into a disabled stupor and the law has allowed it to happen. I also meet the true disabled who will not have their benefits meddled with, but who will be urged to take some steps towards independence however small. I suspect I know at least as much as you about the proposed legislation. So don't patronise everyone who contributes to your blog just because they don't agree with you. Be sensible enough to acknowledge that there is more than one thread to this legislation.

I think the problem is that all disabled people are presumed to be scoungers if they 'look' ok. I have problems with my joints, muscles and chronic fatigue, I look 'normal' other than my crutches and supports I seem totally fine, but behind closed doors when I struggle to get to the loo, when I am in so much pain that I wish I could just die. When I feel like a burden on my family and the state, when I can't do anything but cry when my husband has to wash and dress me.I'm 28, I used to work, I went to university, my husband has a good job and he pays more in tax alone than I get in benefits. These benefits pay for my automatic car so I can drive myself to hospital appointments, otherwise hubby would have to take me. They pay for things to make my life easier such as online shopping for food and anything we need. Otherwise hubby would have to do it. Pays for lots of clothes so that my husband only needs to wash at the weekends. Pays for a cleaner as I can't do it and hubby is busy WORKING and caring for me and our son. If I didn't do this, he would only be able to work part time, therefore pay LESS tax and we would have to claim MORE! My benefits also pays for my tens machine, my medication, my splints, my supports, my crutches, sticks, wheelchair, a special class for physiotherapy exercises.If I could work I would! But I have body wide pain, so this took me an hour to write, I can't drive far and I need to rest most of the day.Yes there are scroungers out there, that is why ESA was originally created, but even the man who created it says that it is no longer fit for purpose! That it denies people the support they require. I paid my NI and tax, my husband pays it now, so why do I not deserve the help - I would give anything to be able to work and be normal, but its not going to happen. This is what the specialists say, not me!We did not cause the deficit, the banks did, why should we have to suffer? There aren't jobs out there for healthy people, so where are all these disabled people supposed to work? If I could work I would. I volunteer at a nursery one afternoon a fortnight, I also help run our local Freecycle group.I am setting up a support group for people with one of my conditons in the local area. I may be ill, but I am not sitting about doing nothing. Would you, anon, prefer we were just put in a concentration camp or work house? Would that make you sleep better?

I don't have a problem sleeping. I have a problem with the lack of a critical perspective on this forum and the self pity and sense of being a victim that is being promoted. If you have chronic fatigue I would be amazed that your doctors don't think you can get better.

Good for you getting out there and making some contribution. Look around for people with your condition who have got better, even if not restored to complete health. Seek the positive. It is you who will benefit.

Just noticed that this blog is being retweeted by none other than Alastair Campbell. Now there is a man who knows a bit about the 'disabled' who have enduring mental illness. do remind us, is it 90% or 95% of adults under forty with such a disabled diagnosis who also have chronic substance misuse? The misery and squalor that results in being classified as incapable is a disgrace to this country. And before you start on about stigma, I agree, but the answer is not enduring benefits.

ooooooooooh Alastair Campbell. and I notice John Prescott is also a fan of this blog. Johann Hari, that well known master of truth has also had a go. This couldn't be the Labour party, aka the scroungers' charter party. Has no one noticed Ed Balls getting round to saying the cuts to the welfare state are overdue?

My neighbour'son was diagnosed with a serious mental illness at 19. His parents got busy with the claims and he ended up in a rather nice flat with a girl friend who had same diagnosis. After everything was paid, they had 600 pounds a month to live on. Both were clear that no matter how well they felt, they couldn't look for work because their benefits would end or at least decrease. Spent their days smoking and drinking with friends. He took his own life two years ago. I partly blame the current benefits system and I demand reform.

Political attacks, personal attacks - why would anyone engage with that? Or comment on a blog expecting anyone to engage with it seriously? that's not "disagreeing with me" it's being aggressive and discourteous.

Your ignorance obviously mean you don't know that 60% of disabled people already DO work? Nothing I say on this blog refers to your queues. I am only interested in representing those who are so disabled or ill that they need your help.

You didn't answer - why are you so frightened? What makes you so determined to prove that no-one like that exists?

Well Sue, I guess you haven't noticed, but you have several people all calling themselves anonymous answering you today. Where do you get frightened from? No one is attacking you, but there are disagreements which you don't seem to like. I am replying to you personally because your blog is emotive and the law needs urgent reform. The posts about mental health or capitalists are not mine. I do have the perspective of 27 years in community services and a disability of my own. I expect my comments to be treated with some respect, but sadly you don't like anyone to disagree with you. Off to dinner now. Work in the morning you see..

do not fight about who is in most need we are all needy in differant ways,all capalist goverments pick on the sick and disabled as the easy targets they are not the majority!do not look for the tories,libdems,labour to help you,they all can find money to fight wars,support our nueclar deterant lol,if ever used we are all dead,but to now help the sick or needed in this country forget it,we must all pay for the mistakes & greed of the system,money to the banks no problem money to help the poor for get it,Anonymous you must be a tory?

Owen Are you crazy? Have a look at any country you like where capitalism is is not the norm and I guarantee you will not find any state support for the disabled. Ever been to an orphanage in Russia? I have. Every looked inside a 'care home' for the mentally ill in any 'socialist' country of your choice? I assure you not a comfortable place. Feel lucky to be living in the UK at this time and support the much needed change in the law.

Wow, some people on this blog who are suggesting that some people are not as disabled as others? Or even that some disability benefits are simply bad for people. That story abouut the boy who took his life had the ring of truth. All Tories I assume, even the one who says he/she works for a London council. I mean you couldn't be a Labour supporter and also support cuts to benefits. Oh, wait, I forgot about Ed Balls.

Sue, Only the person who tweeted about Munchausen is being rude. Not me. Neither you nor your readers are being abused by anyone, but since you are retweeting this blog all over the place, it is going to turn up in the feeds of people who do not share your beliefs about disability. Some of them will question you. Live with it gracefully. delete posts by all means but what does that say about you? Oh and let me suggest that it is a good idea to have a car pool for the children. Everyone needs help occasionally. It isn't just you.

All those 'Anonymous' having a pop on here at the disabled. You seem to forget that you are only one accident or illness away from being disabled yourself. Even if you have private critical injury insurance, your insurer will claim that you 'aren't ill enough' or you 'have the wrong type of illness' to make a claim (as I discovered). So please understand that when you criticise the disabled on here, tomorrow it could be you...

Linda, Actually ( although I can't claim for all the posts) I am disabled . Mine is one of the earlier posts which said that I worked part time. When I was first told that my disability was permanent I became depressed. Fortunately my lovely family only tolerated my self pity for a while, and the group therapy I had for two years got me to value myself properly again. Life can be very sweet if you just let it.

I have read all the above comments with great interest. I am not disabled - my husband is. I work, part time, he cannot. And he held a good job within the public sector for years. Shock Horror he was medically retired aged 39. And before someone anonymous butts in, not through stress and not through mental illness. He had, and continues to have, a tumour in his spinal cord that grows back every time it's removed. Now on some days, he looks ok . On others, and they are more common, he can hardly walk. Would love to be back at his old job, even for an hour or 2. But no "reasonable adjustments" could be made for him. So it was not a case of him giving up, but the employer giving him up. Sometimes it's very easy for others to point out how brave they are. The writers of Sparticus haven't pointed it out - they got on with it. But they are brave and they are doing their bit for all disabled people. So yes, glad you can work, fab. But I imagine that everyone who makes well thought out comments here would love to work too. But can't - bit difficult when you are constantly in and out of hospital or attending appointments in the hope of improvement. It's very easy to judge, less easy to empathise. Well done Sue and friends. Awareness is thanks to you and yours. I applaud you all. Mrs not-quite-anon.

'Not a good idea to assume anyone who disagrees with Sue is a bad person. She is writing a public blog after all and should be up for a little challenge to the more emotive posts. People with no one to care for them, abandoned single parents and so on. Bleeding hearts may respond to this kind of thing, but it is wearing thin for the rest of us.'

So, why are you posting on it then? there are plenty of other sites you can post your 'reasonable views' This may be an open blog but it is also a resource for thousands of people who are now constantly maligned by forces much more powerful than they are. The right wing Libertarian view that ''benefits demean and weaken disabled people and hinder recovery'' are usually expressed by people who are healthy and often has all the middle class opportunities in life.You can see their real lack of concern when they actually use the fact that D/P have mobilised effectively as reason to say 'can work' ignoring the cost the mobilisation is having on DP's health, etc. faux concern, they are reactionaries of the worst kind who really should go and ''live in the US'.

I like others also think that a number of these 'anons' are the same or rejects from CIF where they are now getting a very hard time.

Finally, this blog is the best thing that has happened to D/P in years, the charities and whats left of the left abidicated on their responsibility, this is our answer, we won't go quietly...

So,Anonymous, I am a bigot because I don't agree with you? I should go and live in the US because I think you should work for a living? I am CIF (whatever that is) because you don't like my posts. Tell me what does your post make you sound like? Apart from rude and aggressive of course. Perhaps Sue will delete your post, Aren't you worried?

Another opportunity, Liam Bryne shadow Works and Pensions Secetary (and uber Blairite) is speaking at a public meeting at the LSE in London 'renewing Beveridge' basically advocating even more delitorious and brutal reform, maybe people who are able to get to it could offer different opinions in this 'debate'ReplyDelete

I too am one of the anonymous on this site and have been here for a year. I don't have the courage to challenge some of the 'culture of entitlement' folk who feel so badly about the change in the law. My husband is disabled too, and is unlikely to work again, but the changes will make no difference to us financially. I am pleased that someone has the courage to push back on some of the people writing here and if Sue doesn't want a debate, then she shouldn't publish.

Sue - I am Mrs Not quite Anon. You have heard from me via twitter. I asked you to rest for 24 hrs! I think that people like to say " look what I can do". They don't realise that this blog is full of people who can't do. I find it offensive to harp on about how great it is to do stuff. I'm sure my husband would love to be able to do everything and work. However, you and your crew Are giving something back to us all, and your work is appreciated by do' many people. Well done and take no notice of those who complain!

About Me

I have a rare form of Crohn's Disease. I was diagnosed 21 years ago and have had many operations to remove strictures (narrowings in my bowel that grow like tumours) I suffer daily pain, often vomiting, malnourished and weak. I take mega-strong medications every day including chemo-style immuno-suppressants, opiates and anti-sickness injections. Sometimes I am fed into my central vein by tube, other times I can enjoy a nice meal out. I have children that I often can't look after and a husband who often looks after me.
Our lives are disrupted daily by the misery of a chronic condition.